What Price Better Health? Hazards of the Research Imperative
Daniel Callahan, best known for almost single-handedly starting the bioethics movement in this country, here tackles our fascination with research. He brings to the subject his impressive credentials as past president of the Hastings Center, a bioethics think tank outside of New York City, and as the author or editor of over 30 books on health, science and public policy.
Callahan goes beyond the usual worries about research, where the central questions concern either the integrity of the researcher and/or the knowledge and consent of the research subject. He asks questions about the way in which research fits into the rest of our lives and argues that our drive to do research opens up questions of justice. For example, do the sorts of questions we pursue lead to better health care for all or only for some, and does research lead to a more equitable access to the benefits of research itself? He is unhappy with some of the answers to these questions.
Callahan delineates the complex motivations and institutional arrangements that undergird research. He is good at exposing the hard underside of the research imperative. Many of us imagine that research is done by disinterested academics in university laboratories, but Callahan points out that it is done by people with very defined interests, including but not limited to the advancement of their own careers. Not only is research tied to tenure and promotion at universities, but it is motivated by the desire for profit for the firms that often underwrite it, within the university and without.
It is not just the money that concerns Callahan. He argues that we have become sloppy in our thinking about research and tend to defer too much to the imperative to do research.
An example of sloppy thinking is the claim that those who oppose stem cell research involving the destruction of human embryos will be responsible for the deaths of all who might have been saved if this research had been allowed to go forward. Callahan points out that, by definition, we cannot know what the result of research will be and therefore cannot be certain that a particular piece of research will save lives, though we may hope and expect it to do so. The lack of certainty about the outcome should prohibit us from condemning those who oppose the research. Yet claim after claim in support of various kinds of research is marked by such sloppy thinking.
One of the best chapters in What Price Better Health? discusses the research on aging and how that research has become part of the battle against death. Callahan points out that our hubris about research is what leads some of us to believe that “death is a preventable disease.” He is all for research about the diseases that strike the elderly, but finds problematic the research done under the imperative that we should conquer death.
Callahan notes that many people in nonscientific communities become cheerleaders for research science. Those appointed to governmental commissions supposedly doing oversight on scientific matters are often the most enthusiastic and uncritical supporters of a particular research project. Those governmental commissions sometimes exclude the perspectives of people from particular religious communities. While Callahan does not formally depend upon religious interpretations of human life to support his claims, he is open to the insights of particular religious traditions and wants them included in public conversations.
Callahan is painfully aware that our discussions of research are tied into other conversations. If “choice” is our ultimate good, and we are not interested in considering the consequences of our choices upon others, then researching enhancement technologies for children makes sense even when it is not clear that these technologies are good for children. All that we need to know is that parents desire such technologies. If health is defined individually rather than socially, then all sorts of enhancements make sense, and it makes sense to fund the research that might bring them into being.
Time after time Callahan points to the powerful impact that individualist free-market thinking has on research. This kind of thinking ignores what happens when a number of individuals change the character of our society, often negatively, through their individual choices. Callahan shows that many of the pharmaceutical industry’s claims are not supported. He points out that even when we are successful in research, we often do not attend to its costs. There is no free lunch, only more or less expensive ones, and we do not share equally or equitably in them.
Callahan is most refreshing when he turns toward the question of research priorities. What sorts of research programs should we undertake? He is interested not only in where we might succeed but in where we might make a difference in the national health. Research for the benefit of the few is not part of his agenda. In one of the essential chapters of the book, Callahan tries to outline the elements of a robust consideration of risks and benefits. That chapter alone makes the book worthwhile.
Callahan does not have solutions for all of the problems he identifies. His purpose is to make clear the deficiencies in the system and to offer proposals about how to go forward, in genuine uncertainty, attempting to benefit all, not simply the well-off. The task he sets us is to bring about the practices that will give life to his proposals. Yet this may not be enough. As sensible and generally correct as Callahan is, his vision needs institutions that are willing to run counter to the pressures put upon research today.
I have a colleague who left a major research institution to work with undergraduates because she believes that large-university scientific research is too easily corrupted. She now worries that precisely what she feared in the large university is coming about in the undergraduate setting. If she is correct, where can research be done in the fashion Callahan suggests? Without an institutional base that can engender a counterset of research practices, much of what Callahan argues for will be difficult, if not impossible, to achieve.